Struggling in the Pandemic? Take a Page out of the Sick Sad Girlz’ Book

Letting go of how you thought your life would look like is nothing new to those with chronic illness.

 minute read

Rosa and Kenzie are lifelong sick girls. Diagnosed with lupus at 22, Rosa gets stuck in a hospital a couple of times a year, which is then followed by a period of bedrest at home. A similar reality is not new to Kenzie either – she’s had a heart condition since birth. For those of us who are lucky enough to be in good health, chronic illness isn’t universal – but Sick Sad Girlz Club, the Instagram platform Rosa and Kenzie founded, hopes to give plurality to the experience. 

Citing the need to  reframe Instagram’s potential in adding meaning to both themselves and others with chronic illness, she says, “It didn’t have to be ‘compare and despair’. This heart wrenching thing of feeling less-than, or having FOMO around everybody else’s more amazing lives. I would say the more that I’ve shared my own story, the less overwhelming, powerless and unmanageable it became for me. There’s such power in allowing your friends, family, and audience to cope with you.”

Several months into a global pandemic, experiencing isolation is a first for many, but not for those who suffer from chronic illness. When faced with a new challenge, a strategic approach helps, nodding to those who know more. Kenzie and Rosa sure do.

People have never apologized to Rosa so much in her whole life. “All of a sudden, people are coming out of the woodwork and being like, I so underestimated what it feels like to not be able to leave this space. It’s a real wake-up call for people.” Speaking from experience, she says, “The physical inability to leave the house is self-confronting. You’re confronted with yourself constantly.”

Rosa, via her Instagram (photo by @lizziecamps).

For those with chronic illness, the first real challenge is giving up how you pictured your life would look like. To Kenzie, that means “grieving your former self, or the life that you thought you’d be able to live. If I wake up and my body hates me, I have to just accept that. The thing I continue to tell myself is to stop apologizing for who you are, where you’re at.” 

Toxic positivity is another form of unnecessary pressure – that of obsessively finding the opportunity for growth, when karmic energy sounds like a joke. “Fuck that. But if you’re able to transform it into something that can be positive, it can be really freeing. Pain into purpose.”

With isolation, self-care becomes a necessity. “Semantic satiation” is when you repeat a word until it loses its meaning; “self-care” being case in point. Laughing, Kenzie says: “Rosa and I kind roll our eyes a lot at the idea of self-care just being like, Slap on a clay mask and watch your whole life change.” 

“There’s a really wild Instagram social media version of what self-care is,” says Rosa. Not to demean the live-laugh-love Pinterest face mask at all. If that’s where somebody can find five minutes of peace, there is an introspection there.” What does self-care mean to her? “I would say it’s maintaining my own sanity. I address the mental, physical and spiritual on a daily basis. Whether those are a prayer and meditation, working out, or going to an AA meeting, that’s a thing I did that day.” Figuring out what action her body needs and doing it is key. 

Kenzie, via her Instagram.

Both working in entertainment, Rosa and Kenzie call themselves natural workaholics, compelled by what they do professionally. For those with chronic illness, being in the creative industry can be both a blessing and a curse. On one hand, there’s a flexibility you wouldn’t have as easily in a more traditional working environment. On the other, “Capitalizing your energy can be really frustrating. But the times that I felt the most adult in my life are the times where I’ve successfully learned how to prioritize things.,” says Kenzie. Beyond the self-inflicted pressure to be productive, Rosa believes we should shift the focus on “wanting to continue to create, despite the circumstance, rather than [give into the] overwhelming societal pressure to succeed at what we’re doing.” 

Creating a safe space in the workplace means allowing for transparent dialogue. According to Rosa, it’s especially necessary in a setting where  you’re dealing with historic beliefs around the hysterical woman. 

“As long as I can come to the table and say: this is what I’m capable of, and this is what it looks and feels like for me. Does that work for you? I know it can be very limiting in terms of job availability. But I would just say that if this pandemic has taught us anything, it’s that there is a real capability in the world for the days you can’t physically participate,” she says. “Zoom – and all these things that we’ve all cobbled together to keep our jobs going – shouldn’t be forgotten after this pandemic. All of a sudden, you’re seeing disabled people who, for the first time, were able to really thrive in a working environment. That’s because the tools are designed for us.”

It’s a tough time for control freaks and serial planners. The pandemic completely subverted how a schedule looks: even planning for the future is harder when progress in the short term seems like an ideal we relinquished long ago. Anxiety feeds off uncertainty, and it’s tricky to be faced with a schedule you’re unsure you’ll be able to stick to. “I like being a person, I like working, and it’s really hard not to be like: Yeah, I’m in. The more, again, you inform the people in your life, the more ease around it I have felt.”

Professional FOMO is not necessarily relative to what others are up to. According to the Institute for Employment Studies, around 2 million people lost their jobs in the UK due to the coronavirus outbreak. How do you realistically set goals when you feel like there’s no room for your ambitions? 

Both Kenzie and Rosa believe it’s a matter of having a fluid approach on how a path should look on a daily basis. Kenzie has no doubts: “I’m going to be successful in this endeavor. But the journey will be different. I’ll just have to figure that out more. Will something affect the rest of my life? No. It’ll affect the day that I’m, and then I’ll get over it.” 

Nobody is immune to FOMO. We’re all familiar with the sentiment of  missing a loved one, but we’ve never felt the distinct pang of missing people. Not family, nor your partner: people. We even miss public transportation – delays and hygienic conditions we loved to complain about be damned. What we’re really missing is social spaces as we used to experience them. Having to figure out where every potential risk hides and where we can find a fragment of normality is 2020’s Rubik's cube. For those who have chronic illness and are high-risk, seeing the outside world as a threat is not a novelty. 

Rosa feels for people that have never gone through this before. “But the world has the potential to fuck anyone over at any moment: the universe will do what it wants. There’s a certain amount of fear that is healthy because it makes us precautious, but fear shouldn’t make you limit the way you exist in the world,” she says. “There’s always a new, probably more interesting, way of living your life in a manner that reflects the world we live in because of a pandemic.” If you can’t get out of the tunnel, you might as well make it comfortable. 

Whether this will be a chance for change or a missed opportunity is up to us. We must also acknowledge those who have to readapt to a different version of themselves periodically, and without any notice. Kenzie worries things will go back to the way they were, but is reassured by a surge of apologies, empathy, and understanding. 

“So many girls on the SSGC platform have been like: I’ve been thriving. I have all of my friends coming to me asking me for advice, they can see me a lot stronger than they used to. They see their strengths. I think that’s something that hopefully will be taken into account, after all of this is over. That confidence in themselves: we’re stronger than we thought. We do have things that other people don’t.”

Main image via @sadsickgirlz

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